Your Treatment Plan
Your Treatment Plan
There is not one treatment plan for vasculitis that works for everyone. Successfully treating vasculitis requires collaboration between you and your healthcare providers. Most forms of vasculitis are chronic. This means that while you may go through periods when your vasculitis is quiet and you don’t need treatment (remission), your vasculitis is not cured and may become active again (flare or relapse). Medical professionals will always be a part of your life, so it is important to build a treatment team you trust.
Some forms of vasculitis can impact many different systems in your body. To effectively treat your vasculitis, you may need a team of medical providers and specialists working together to coordinate your care.
Specialists
- Allergist/Immunologist: specializes in the treatment of allergies and asthma
- Cardiologist: specializes in the heart (cardiovascular system)
- Dermatologist: specializes in the treatment of skin disorders
- ENT/Otolaryngologist: specializes in the treatment of diseases and conditions of the ear, nose, and throat
- Hematologist: specialize in diseases that affect your blood, bone marrow, or lymphatic system
- Nephrologist: specializes in kidney care and treating kidney disease (renal system)
- Occupational Therapist: helps people find ways to complete activities of daily life that might be difficult for them due to illness or injury
- Physical Therapist: helps people strengthen weakened muscles, reduce pain, and move better
- Pulmonologist: specializes in the lungs (respiratory system)
- Registered Dietitian: helps people make dietary changes to improve health and wellness
- Respiratory Therapist: helps patients with breathing issues
- Rheumatologist: specializes in immune-related and inflammatory diseases
- Vascular Surgeon: specialize in managing veins and arteries in every part of the body except for the brain and heart
Every good team needs a leader, someone who knows the big picture and is willing to make decisions. Many people with vasculitis choose their rheumatologist as their team lead. However, you may choose a different medical professional as team lead based on what body system is most impacted by your vasculitis or your relationship with your healthcare providers.
Role of the Treatment Team Lead
- Approves any changes to the treatment plan
- Approves any changes in medications
- Helps you coordinate care with specialists as needed
- Collaborates and communicates with other members of your treatment team
- Is consulted before any medical procedures, surgeries, or major dental work
Preparing for a visit with your healthcare provider? Make sure you have these ready to go:
- List of current medications, refill requests, lab tests you need to schedule/discuss.
- Your main goals for the appointment (no more than three).
- A summary of how you are doing (be brief and HONEST).
- Any problems (side effects, insurance, expenses, ANYTHING stopping you from carrying out the treatment plan).
- List of any questions you have that only the doctor can answer.
Some Possible Questions:
- Why are you recommending this test/treatment?
- Why do you think this treatment will work for me?
- How will we know if the treatment is working?
- What are the other options?
- Ask yourself, is this the right doctor for answering my question?
Before you leave, make sure you:
- Schedule your next appointment.
- Know your homework (bloodwork, tests, referrals).
Your treatment plan should be a collaboration between you and your healthcare team. The more you know about vasculitis and the available treatments, the better able you will be to weigh the pros and cons of different treatment options and work with your healthcare team to design a plan that aligns with your values, preferences, and goals.
Learn all you can about your form of vasculitis and the available treatment options.
- Ask your healthcare provider questions. Make lists of questions before your appointment so you don’t forget what you want to ask.
- Use reliable sources to learn more.
- Understand your treatment options.
Questions to ask your healthcare provider- What are the benefits and risks of each treatment option?
- What are the potential side effects?
- Why are you recommending one treatment over another?
- Discuss barriers to treatment. If there is anything that is going to make it difficult for you to follow through on a recommended treatment such as medication costs, lack of insurance, or transportation issues discuss this with your healthcare provider. They may be able to direct you to resources that can help.
Electronic health records have not replaced the need for you to keep an accurate record of your personal health history. This is even more important when you have a rare autoimmune disease. You and your care partners will need to be able to quickly share your health history with medical staff.
Our Navigating Your Vasculitis Journey guidebook is a wonderful resource. The guidebook contains an entire section on writing your health history. This guidebook was developed by a mental health professional who is also living with vasculitis.
Where should you keep your health history? Use whatever system works best for you. Some people use a binder while others prefer an app on their phone.
What should you include?
- Current list of medications and supplements including dosage.
- Details, including dates, of hospitalizations, surgeries, and ER visits.
- Symptom history. What symptoms are you having? Are there certain times when they are better or worse? Do your symptoms get better or worse as your treatment plan changes? For example: What symptoms are you having as you taper (reduce) your dose of prednisone?
The My Health Journey tracker contains 40 sample tracking sheets and logs for:
- Blood Pressue
- Sleep
- Medication Schedules
- Symptoms
- Labs
- And more . . .
